I have never been a big New Year’s person.  I do always reflect, but I find myself doing that periodically throughout the year as well.  Every day is a new day, after all.  Every moment, we have the choice to do something different than the moment before.

But I have to say, I am glad to leave 2018 behind.  It was a hard year.  Last year, at this time, I was feeling a lot of dread going into 2018 – March held a really difficult and emotional divorce proceeding in court – May held Kiran’s MRI and results – Everything felt so huge and scary and insurmountable.

But guess what?  I survived.  All of it.  And not everything went exactly as I had hoped or would have liked – but ultimately, Kiran and I are still here.  Kiran’s dad is still here.  Our family, both blood and friendamily, still here.

I feel like I should get a shirt that says: I survived 2018.

I don’t have dread going into 2019.  I don’t have near the fears and uncertainties.  All the way around, things are relatively stable.  There aren’t big tests or diagnoses I fear for Kiran – I am anxiously awaiting genetic results, but other than that, nothing huge is medically on the horizon for him.  I don’t live in denial that this could change at any moment, but I just don’t hold that anxiety going into 2019.

Honestly, 2019 will hopefully be a year that holds a lot of room for me.  I am learning, every day, every moment, how to better take care of myself and how that actually DOES (for real!) result in being a better mom for Kiran.  I do have some anxiety and fear around some steps forward I will be taking this next year, but it is just nothing like what I felt like a year ago.

I am thankful for the peace.  I am thankful for the lack of unease in my soul.  I am ready to leave the negative of 2018 where it belongs, and I am ready to bring forward the positive of 2018 into 2019 with me.

I am thankful to be spending the last day of 2018 with Kiran and ringing in the first day of 2019 with him as well (though he will be asleep – I’m sure I’ll sneak in for a new year’s kiss).

We survived 2018.  Makes me think we can survive anything.

Whenever I am asked, either in person or on a form, about when Kiran hit certain milestones, I have to pause.  First of all, the answers aren’t simple.  He started out in his life hitting some milestones, like rolling from stomach to back, at “normal” times.  But we also saw some of these milestone actions disappear.  Regression occurred.  And with other milestones – like sitting up, for instance – it’s kinda like I need to put an asterisk and a note.  Kiran still can’t independently pull himself into a sitting position, and you still can’t trust him to maintain that position for a long period of time.

But mostly, I just chose to stop keeping track.  As he wasn’t hitting milestone after milestone and the months – and now, years – passed….for my own sanity, I just chose to not pay attention.  To not fret about the dates he hit this milestone or that one – to not try to remind myself of all of the ones he continues to be nowhere close to hitting.  Or may never hit.

You know – funny thing about preschool pickup – it has a way of slapping you in the face with two really big milestones Kiran has yet to hit.  Every single day, those preschoolers come running out of the building yelling “Mommy!” or “Daddy!” and flinging themselves at their parents.  And every day, I walk up and meet one of the associates at the door, so I can take over pushing Kiran’s wheelchair and ask how his day went.

And truly, I cry tears of joy when I see other kids – especially other heart warriors or other medical warriors who I know are working harder or have worked for so long to reach milestones – when I see them hit those milestones.  But it also breaks my heart just a little, every time.

The grief is ongoing.  The journey is hard.  There are days preschool pickup almost breaks me.  There are days seeing others hit milestones makes me more jealous than happy for them.  It is sometimes ugly and dark and just really difficult.

But also, there is one milestone – only one – I put in my calendar so I can remember it every single year.  On March 8, 2016, Kiran laughed – REALLY laughed – for the first time.

I had no idea then that this would be such a perfect milestone to document.  That laughter is one of the defining characteristics of this amazing little boy.  That he would not only bring me so much joy, but that he, himself, would just embody joy.

He is the reason I am always able to claw my way out of the dark times.

 

April 10, 2016.  If you haven’t been reading this blog from the beginning of Kiran’s story, I want you to find that blog entry in the archives and read it first.

I went to a concert tonight.  For King and Country.  But I didn’t go for them.  I’ll be honest – I wasn’t even sure I liked them or knew any songs by them.  This is how much I don’t pay attention to who sings the songs I hear all the time on the radio (because turns out, I knew several of their songs).  I had no idea I would love their show so much – I mean, the musicality – all the instruments! – a trombone and a violin on the same stage – They put on a good show, and I thoroughly enjoyed it.

But I went tonight for one song.  I went tonight to hear Reckless Love by Cory Asbury.  As soon as I heard he was going to be at this concert, I told my boyfriend we had to go.  I’m not even really a big concert goer.  But this song… It’s MY song.  I still can’t listen to it without tearing up.  And it was so cool – and so worth it – to experience it live.

In April of 2016, I found myself in a really dark place.  My life had changed completely and was very different from any life I had ever imagined.  I had an infant with a serious unrepaired heart condition, a feeding tube, a brace he wore most of the day.  It had become old hat to visit the ER with him.  We were approaching open heart surgery – a huge trip to California for the best surgeon for his heart – and the unknowns were eating away at me.  I was coming out of the fog of the newborn stage and coming to the realization that I (for the second time, mind you, some of you may not know) was in a very unhealthy marriage.  I had no idea what to do or where to turn, and suddenly I was considering going to CHURCH.

For so long, the fact I had made a conscious decision to walk away from my faith was a huge part of what defined me as a person.  I was a skeptic; I hated the hypocrisy of the institution of religion – I still struggle sometimes with these things.  I struggle with being vocal about where I am with my faith now.

It’s more real than any faith I may have had growing up, but it’s not very easy to explain.  I’m not here to explain it, though.

I am here to talk about this line from the song: “There’s no shadow You won’t light up;
Mountain You won’t climb up; Coming after me; There’s no wall You won’t kick down;
Lie You won’t tear down; Coming after me”

It is the line that always makes me cry.  And sometimes, it makes me go “Really, God?  Did it really take ALL OF THE THINGS to get to me?”

Obviously, it did.  And I truly feel like, through it all, He never gave up on me.  Even as I write this out, it all sounds silly to me.  But I feel it, I believe it, I cry every single time.  It is through music that I commune with God, and this song.  This song.

“Oh, the overwhelming, never-ending, reckless love of God
Oh, it chases me down, fights ’til I’m found, leaves the ninety-nine”

 

At least in our world, certain therapies or goals tend to take front and center at different times.  I find it nearly impossible to focus on everything at once, so there are some days or weeks that feeding is a big priority, and some where it takes a back burner.  I simply don’t have enough hours in my day – nor enough space to worry in my brain – to always have it be at the forefront.

I feel it’s been on the back burner for awhile.  The focus was very much on the preschool transition for quite some time, and it has taken a little bit to get into the swing of the new schedule.  And the swallow study – well, that was a setback – sometimes grieving where you thought you were headed means you hide from the issue for a little while.

After feeding therapy last week – and after Kiran finished a jar of carrots between Tuesday’s dinner and Wednesday’s lunch – I decided to focus and take notes this week.  Kiran has been doing significantly better and eating more when motivated (dinner tends to be the very best time; breakfast the worst; lunch and snack vary with how tired he is)…but this week, he has simply rocked it!  I am sure my focus and willingness to really put forth the effort at every meal we practice oral has helped – but man!  This week, he has finished 2 jars and 4 pouches of food.  This is HUGE – I haven’t had to throw ANY  food away this week!  And twice – both at dinner time and both with the same preferred food – he finished an entire pouch in one sitting!

He has also been accepting drinks from his cup a lot more consistently this week, and that was definitely something I worked on a lot with him.  We are back on nectar thick water, due to swallow study results, and I haven’t been working on water as much as I should be.  This week, I really put my brain in a better place about it, and he has gotten some really good practice with it.

It hasn’t been without issues.  He has had a couple instances of coughing fits – and a few short, quick coughs as well – but overall, he has done really well.  7 of 12 meals went off without a single cough!  And every meal that he has accepted food, he has been very eager for the next bite.  It has actually been really fun this week to feed him.

I know – from Kiran’s entire history and especially his feeding history – that this may not mean we have actually crossed some threshold and gotten to the next step.  I know that he might start refusing food or struggling more, and I might be right back to throwing away expired food tomorrow.  But I have also learned to bask in the victories.  He has had such an awesome week, and I am so proud of him.

And I cautiously hope this is the start of him really enjoying food and wanting to experience it.  We have a ways to go with his skills, but motivation will be a key factor in propelling him to where he needs to be.

I just finished reading the book House Rules by Jodi Picoult.  And even though Kiran doesn’t have Asperger’s – or autism at all – when I read this paragraph, I think I might have actually gasped:

“This is what you can’t explain to a mother who doesn’t have an autistic child: Of course I love my son.  Or course I would never want a life without him.  But that doesn’t mean that I am not exhausted every minute of the day.  That I don’t worry about his future, and my lack of one.  That sometimes, before I can catch myself, I imagine what my life would have been like if Jacob did not have Asperger’s.  That – like Atlas – I think just for once it would be nice to have someone else bear the weight of my family’s world on his shoulders, instead of me.”

It’s like a summary of what I am always trying to write about.  This is what I am trying to help everyone understand.  It’s why I keep coming back to this blog, to write and write and write some more.  Letting the thoughts and emotions out of my body and onto this screen helps lessen that load, just a little bit.

When I have a particularly demanding week – or I’m sick and have to also think about my own needs in addition to Kiran’s (I am still not great at doing that unless it’s put in my face, like with illness) – I often wonder how much longer I can do this.  And I always feel guilty – and silly – even writing about the exhaustion.  It always seems like the weeks I just want to coast – I just NEED to coast – are the weeks I have to fill out disability reports; and Iowa City calls to reschedule an appointment already on the calendar so I have to call them back (remember how I hate all the phone calls); and we decide to take Kiran into the walk-in clinic because we are finally wondering if his eye discharge has been going on too long that it might be something more serious (it’s not); and I have to call the medical supplies place three times just to (maybe) get our first diaper delivery (I’ll let you know, after I call the third time tomorrow); and his private therapists all have days off so two weeks in a row, we go to Childserve three times per week instead of two; and the child life specialist in town needs a callback to get more info on Kiran’s medical history so she can explain to the kids in his preschool class all about the cares they see happening daily; and our healthcare providers need to meet for his annual levels of care assessment; and I just wanted to coast to Christmas.

But I continue to put warm compresses on his eyes, after thoroughly washing the cold germs off my hands, and I put gloves on before I do the tear duct massage.  Because it’s working.  The eye gunk is clearing out.

And the rest of it, too.  I’ll make the three phone calls I have to make tomorrow; we will attend every therapy and assessment appointment we have every afternoon this week (save Friday, thank God for a free afternoon!).

And I will keep wondering how long I can do it, given the exhaustion.  I will be thankful every time the helping hands show up, but ultimately, I feel the weight of it all falls back to mama’s shoulders.  And even three years in, with so many experiences I never dreamed I’d have under my belt, I do not feel equipped for this job.

I seem to be running on fumes.  Literally just trying to make it…I don’t even know my destination…by coasting.  Reviewing Kiran’s medical history and diagnosis list took a lot out of me emotionally and mentally yesterday.  Physically, daily demands never slow down.  I had two important meetings this morning before and during preschool that ate up my entire morning.  I feel like my to-do list stretches out, longer and longer before me, and all I want to do is take a nap.

It doesn’t help that I am catching a cold.

I’m tired, I’m worn.  My heart is heavy.  That really seems to be my theme song.

I find when I struggle with this type of exhaustion – the all-encompassing, overwhelming type – that I am back in what I call the darkness.

It’s not good here.  I am not my best self here.

I do my best to keep it a short stay.  I’m doing better at being honest about it with the people around me who can help.  I think I figured out my destination: bed.  Today, I just need to do what I need to do to make it til bedtime.

Today has been tough.  I don’t know what part of me thought I could breeze through Kiran’s disability report for DHS to determine he is, in fact, still disabled, and therefore can stay on the health and disability waiver and get those services….

It took me a solid three and a half hours, and I still need to print some documents off and make copies of everything so the next time they decide I need to prove my son has a disability, it can maybe only take me two hours to do so.

It’s a harsh light to be put in, having to set out to prove to someone your child has a disability and needs services.  It’s not fun, sifting through the diagnoses and the list of specialists; having to dive deep into the part of your life you try to just tuck away so you can LIVE your life.

But it’s worth it.

And tonight, I got to watch Kiran live his life at the Help-A-Heart Christmas party at Courage League Sports.  That place?  Awesome.

Have you ever dreamed your child could run under a parachute while playing a game among friends?  I will be honest: it hadn’t occurred to me to grieve this experience for Kiran.  Only, I don’t have to.  Because tonight, I saw the people who work here (actually, it was the owner herself) run while pushing Kiran’s wheelchair underneath the parachute like he was just any other kid playing a game.

My heart grew three sizes.  Today was a grinchy day.  Today was a day I didn’t want our life.  And then.  I got to see my kid just playing and being a kid, thanks to these people who just know how to make that happen.  I’m still learning how to make it happen.

And the cherry on top?  I got him to smile for a picture on Santa’s lap.

Kiran was scooped up from preschool, and we headed straight to Iowa city for his eye appointment this afternoon.

These appointments always take the longest. Lots of waiting.

But!

All the news was good today.

His right pupil is remaining open. When they do the surgery Kiran had to help open up his pupil in his right eye, oftentimes it shrinks back down due to scar tissue. That is not happening for Kiran at this point – His pupils are roughly the same size, and Dr D was able to clearly see the red reflex in both!

The cataract in his right eye is not getting bigger. At this point, it is not getting in the way of his vision.

We did a repeat VEP test. Kiran had this test done two years ago.  This measures how quickly and with how much strength visual stimuli is getting to the brain. The strength of the signal was HUGELY improved from two years ago and was essentially normal. The speed at which the signal gets there, however, is still quite slow. She explained that adults who have had normal vision that then develop this issue often describe things as being “muddy”, color contrasts not being as sharp, that kind of thing. But we were all quite excited about the strength of the signal – huge improvement that Dr D didn’t necessarily expect at this point.

She does feel he has vestibular nystagmus. Nystagmus is the shakiness of the eyes. He used to have it all the time as an infant but has largely grown out of it. However, we are now seeing it with certain movements – like spinning – that have to do with the vestibular (think inner ear/balance/coordination) system.  We want to be careful not to overdo those movements and continue to explore them cautiously in a therapy setting (which we do with our OT already).

Dr D also felt his eye teaming – or his eyes working together – isn’t perfect but is a lot better than what she would expect at this age given his history. Since he had such a small pupil and all those pupillary membranes in his right eye for the first roughly 18 months of his life, his eyes didn’t learn to work together during the time they normally would. This is often a permanent issue, and she said there’s not much we can really do other than what we are doing: Have him wear his glasses, offer visual stimuli from various distances, etc.  But, again, she felt that his teaming was better than she would have predicted given his history.

All in all, I will keep taking this news. Kiran is doing great, he is improving visually, and he’s just a rockstar patient.

You know how, as a parent, you second-guess every decision you make pertaining to your children?

Kiran sat next to Santa last night, in his wheelchair.  We got to the open house, and we watched for awhile from a safe distance.  There was another little girl who was apprehensive about Santa, too, and we watched him next to her and her parents.  When it was our turn, I opted to just let Kiran sit next to Santa, in his safe space.  He didn’t cry this time, but he also wouldn’t smile.  He did look at Santa and then bring his hand to his mouth in kinda a surprised way.

He didn’t cry, which is progress.  And this was take one.  We will see Santa at our Help-A-Heart party next week, and I will attempt to get an on-Santa’s-lap picture then.

I have been regretting not trying to do that last night.  Get a picture of Kiran on Santa’s lap.  So, of course, in true Holly fashion, I have been analyzing why I didn’t this morning.

Two reasons, really.

1) He has never liked Santa.  In years past, he has been, at best, apprehensive; at worst, he has CRIED.  And if you know Kiran at all, he simply doesn’t cry.  Like, seriously.  It is so rare for him to cry that it startles me when he does – and I certainly know something is actually really wrong.  Now, this is nuts.  Kiran loves EVERYONE…except Santa.  And there is that part of me that simply thinks “This kid has been through – goes through, daily – enough; why would I put him through a stupid Santa lap picture when it’s going to mildly traumatize him for life?”

2) I struggle with it for a different reason this year, made so poignant by the little girl next to us who was able to communicate with her parents that she didn’t want to see Santa.  Kiran can’t tell me.  He can’t let me know, with words anyway, whether it is something he wants to do or not.  And I really am the type of mom that wants to respect my kid’s feelings.  Only…I have to guess what they are.  Granted, I would know after I placed him on Santa’s lap.  But I guess I just was grappling with that last night, so I played it safe.

Exposure is a good thing, though.  We will try Santa’s lap at HAH.  In the meantime, we will listen to the Must Be Santa song some more, and we will keep reading our Christmas books and looking at Santa’s picture.

I trust that he will let me know, the second I set him on Santa’s lap, if he is okay with it.  I just hope he trusts me, his mama, to hear him and respect him – and protect him from the big scary man, if that is his experience of Santa again this year.